Category: RSDS General Info

Written by Sandy Geddes for the RSDSA blog.

I turned 50 in January 2019. Fifty was supposed to be my year. I even did the SNL Sally O’Malley skit as a joke on my birthday. You know the one: “I like to kick & stretch & kick! I’m 50! Fifty years old!”

I set big goals for myself that year. The biggest one was to run the slalom waterski course which is very challenging. I trained and practiced so hard even though I had a broken toe! I just taped it up and got to it. My pain threshold was very high. My husband and I would drive eight hours to Orlando five times in one year so that I could train with a world champion coach. Why did I have this goal? Because I loved to slalom ski and loved the challenge. Shortly after my birthday, I spent two weeks windsurfing every day (yes with the broken toe taped up good) and going barefoot. By the time we returned home I could hardly walk. I scheduled my surgery and my life changed forever. 

How and when did you develop CRPS/RSD?

In March 2019 I had surgery to repair my left foot. It involved removing a bone fragment at the metatarsal joint of my second toe, rebuilding and reattaching the ligament that tore when I broke the toe, doing a bone graft to fill the joint space to make it more stable and excision of a nerve that I had crushed. I knew something was wrong when I had so much burning pain and pressure in my cast. I could see that my toes were black & blue. The PA in charge of my post-surgical care was not concerned. I did not know what was normal since I had never experienced a major surgery before. By the time I was diagnosed two months after surgery, my lymphatic system was not working correctly, and I had lymphedema from my foot to the bottom of my shoulder blade on my left side.

What has daily life been like since your diagnosis?

Challenging with highs and lows. I spend a good portion of my day managing this disease so that I can live life on my terms. If I do something big like prepare for and host a dinner party, I know that I will suffer severely for a week following the event. Everyday I complete exercises like rebounding, calf raises, and desensitizing to help me throughout the day. I also do one on one restorative yoga twice a week and a Pilates reformer class twice a week. My OT does manual lymphatic drainage and myofascial release on my left lower quadrant twice a week. I have done many other therapies that have helped including chiropractic with Burleson Chiropractic and laser and hyperbaric oxygen therapy.

The only prescription I take is Cymbalta for neuropathy. I take vitamin C, magnesium and alpha-lipoic acid. I am working on improving my eating habits by avoiding inflammatory foods and loading up on anti-inflammatory ones. I had my first major setback a few weeks ago when I developed an ulcer in my mouth. My dentist chemically cauterized the ulcer and prescribed magic mouthwash to numb the area. By evening I was in more pain than I ever believed possible. I took hydrocodone for two weeks and that barely touched the pain. Neither my dentist nor the oral surgeon he sent me to understood the level of pain relative to the problem. Luckily my nervous system is starting to calm down.

What is one thing you wish those without CRPS/RSD could understand?

That even though I look physically fine and I am back to windsurfing and wakeboarding I still struggle every day with pain and swelling. That even though I do not always look swollen my nervous system still tells me that I am. That many days I feel like my hands and feet are inflated surgical gloves and that my fingers and toes want to shoot off like rockets. That most days it feels like I am standing on rocks or relief when it is only feeling like bunched up socks.

What advice would you give to newly diagnosed Warriors?

Find a physical therapist and an occupational therapist that understand how to help you. This has saved my life. I could not walk for three months after surgery. It took two months for me to be diagnosed because my post-surgical care was with the surgeon’s PA who did not take my concerns seriously. He said I was claustrophobic when I described the burning pain that felt like my cast was cutting through my leg. At my two month follow up, when I should have already been walking, I could see the concern on my surgeon’s face when he diagnosed me. He said get a good PT & OT close to home immediately. That was at the beginning of May 2019. Once I began PT, I started walking within a month. I was finally released from PT when they could no longer challenge me with what I could do physically. I started OT at the same time and still get treatment twice a week 10 months later and will continue for the foreseeable future.

I could not be as positive as I am today without stress management therapy. I found someone who is non-judgmental and compassionate to pour my heart out, cry, and laugh with. It helped that she is not personally invested in me. She was a stranger when I met her. She helped me set goals and meet them when I felt like I had zero control of my life. Due to my therapists and my perseverance I got my life back and felt sane again. After several months, my husband said Sandy was back. I could finally laugh again and focus on things besides my condition.

What advice would you give to Warriors who have had CRPS/RSD for many years?

Since I know it manifests differently in everyone, I do not judge anyone’s journey, but I do know that for me movement is the key to my successful management of this disease. Every day I push through the pain and swelling. I do whatever it takes each day to make it ease up even though I know it is temporary and I will have to get up the next day and the next to do it all over again. Try every therapy within your reach and do not give up!

Please consider making a donation to RSDSA today!

Written by Kathleen Derby for the RSDSA blog.

Please consider making a donation to RSDSA today!

Written by April Ball for the RSDSA blog. 

How and when did you develop CRPS/RSD?

I had an epidural injection for a herniated disc that I had a reaction to. It was my third injection and it hurt pretty bad when the pain doctor did it. It was unlike the others I had. I cried when the doctor stuck me. I could feel him pushing on my lower back. 24 hours after the injection I could not move my head from side to side. I could not bend slightly and I had to have help walking. I could not lift my right leg or put my sock on my foot. It took almost a year for me to get diagnosed.

I was told that there was nothing wrong with me and that it was just the herniated disc but they could not do surgery because it was not pressing on my nerve enough to deem surgery. I was told I had bursitis and they gave me a Cortisone shot for it. That shot only made me feel worse and walking worse. At that time I did not know I had RDS/CRPS. I was told I had elephant leg when my right leg and foot were swollen and red/purple in color. The doctor who told me I had elephant leg said it was caused from me having a hysterectomy in 2015. I looked him straight in the face and told him he was crazy and got up and walked out of his office. I made one appointment with the pain doctor to see what else could be done. We talked about what was going on and my symptoms and that was when he diagnosed me with CRPS. That was in February 2018.

What has daily life been like since your diagnosis?

My CRPS, which started in my lower back and right leg, has now spread to about 90% of my body. Therefore, daily life is a struggle. I have full body spasms. The spasms wake me up at night. I lose my balance just walking. I am always dizzy. I wish I was able to get up and go to work like I used to. I stay tired all the time. I am not able to stand more than just a few minutes. I have trouble eating and holding a fork or spoon. My appetite has changed because of having CRPS in my stomach and intestines.

What is one thing you wish those without CRPS/RSD could understand?

Everything about the syndrome. Please research and learn everything you can. Ask questions about this disease.

What advice would you give to newly diagnosed Warriors?

Keep a diary and take pictures of your flare ups to show your doctor. Do not be afraid to communicate and ask questions with your doctor. Be your own advocate because no one else will.

What activities or treatments have helped you find temporary or long term relief?

With me, it seems the more active I am the more it hurts me. I cannot walk long distances and now it is getting to where even walking a short distance hurts me. I have a Spinal Cord Stimulator, but it is not giving me the relief that I was hoping for. My right leg still has unbearable pain and spasms about 75-90% of the time when I do something. I cannot even drive because of it. I have to sometimes lie on my left side and that does not always help. And even muscle relaxers and nerve pain medications are not 100% effective.

Anything else you would like to add?

If you have a support system, no matter how big or how small, as my husband tells me, take that circle and roll. I have lost family because of this disease. They do not understand it. They do not want to take the time to understand and support me being sick, and I do not want that. I want people in my life that can accept the fact that I have a disease that there is no cure for and I need their support. I told them if the shoe was on the other foot, I would support and advocate for them. All I got back was grief and negativity.

Please consider making a donation to RSDSA today!

Rare Disease Day is held annually on the last day of February to raise awareness of rare diseases. This year, Rare Disease Day is Saturday, February 29th, 2020, but RSDSA is working to spread awareness for CRPS all week long.

Check out our daily virtual activities and join us if you can!

Monday: Make your voice heard: Share your CRPS journey photos on social media by using the hashtag #RSDSArare. We want to make sure that those without CRPS understand what CRPS is and what it looks like.

Tuesday: Write and/or visit your local and state representatives to educate them about CRPS. Check out this sample letter that you can share.

Wednesday: Join the #SpoonieChat on Twitter at 8p ET to connect with other rare disease warriors. #SpoonieChat was created by Dawn M. Gibson in 2013 for Rheum patients. It has now become a weekly chat for chronic pain patients.

Thursday: Each one, teach one: Share advice for new chronically ill patients and use the hashtag #RSDSArare.

Friday: Connect with another rare disease warrior online or in your community.

Saturday: If you are in the South Haven, MI area, join us for Leap For A Cure at American Legion #49 at 6p.

Please consider making a donation to RSDSA today!

Written by Judi Soderberg for the RSDSA blog.

How and when did you develop CRPS/RSD?

For 25 years I had a shoulder issue that doctors diagnosed as Thoracic Outlet Syndrome. I tried very hard to work with that and just let it go, but the pain increased over the years. So when a vascular surgeon told me it could be corrected with surgery, I was all for it. Of course he did not warn me about the consequences of such surgery, namely CRPS.

He removed the first rib, the anterior and middle scalene muscles, and low and behold, found my brachial plexus bundle was twisted. Normally it has nerves on one side, artery on the other, vein on top. Mine was twisted so the nerves all sat at the top, so when he removed the anterior and middle scalene muscles, he basically removed all the protection the nerves had, and from there, scar tissue was formed which rubs continuously against those exposed nerves. This created injury to most of the nerves that radiate from the brachial from the neck on down to the fingertips, with the nerves to the clavicle involved as well.

When I went back to him in severe pain, he decided releasing the pectoralis minor muscle in two places would relieve the pressure on the ulnar nerve. This just gave me more scar tissue to rub against the ulnar nerve constantly as well. This happened in December of 2008 and February of 2009. The pain has been progressive ever since. And of course, the doctor left his practice here and moved out of state so he could not be found.

What has daily life been like since your diagnosis?

I finally had to give in and go on disability in 2014. My life has been a regimen of pain medications and pain. My house has fallen apart because I cannot clean like I used to. Travel has become difficult due to the pressure on an airplane. Driving has become increasingly difficult since I drive more with my right hand than my left, and my right side, from neck to fingertips, has become fairly useless, movement of any kind causing excruciating pain so anything I do is limited in scope.

What is one thing you wish those without CRPS/RSD could understand?

I am not pretending. You may not be able to see it (unless you are in my company for a long time and can watch as my tough guy exterior crumbles), but it is very real, very debilitating, and not something I can do anything about. I try to give people a little taste of what I am feeling by having them press that indentation between your neck and your clavicle, press hard, and they will hit the brachial plexus and get a zing from it. Multiply that zing by a thousand, and maybe you can almost know. But either be understanding and help me out now and again, or go away, because it is hard enough to deal with pain all the time without having to also deal with the prejudices of people who do not suffer this kind of pain. Do not look at me like I am a heroin addict when you notice the amount of pain medications I am on. I wish I could get high from them, but they barely even touch the pain. So, do not be so judgmental.

What advice would you give to newly diagnosed Warriors?

If the injury is new, do the physical therapy. There are methods out there to help reduce some of the pain. And if the injury is new, it is possible to build up the muscles that protect the area so you can minimize the pain… at least for awhile. And find a good pain clinic. These days pain management doctors are terrified to give out medications that actually make a difference, so try to find one that specializes in injury and CRPS. Look out for the ones that specialize in Fibromyalgia. They tend to not take you seriously and they do not recognize the difference between the two disorders.

What advice would you give to Warriors who have had CRPS/RSD for many years?

Find something you love to do that does not cause you too much pain and takes up hours in the day so you can enjoy life. I found that I am a pretty darn good developmental and line editor for fiction, particularly Fantasy/Urban Fantasy and PNR books. I have many authors that use my abilities and I am loving every minute of it. Particularly when a book comes out that I worked on that gets great reviews. It is a new love in the business world. I am creating a small business that I will make a minimal amount of money doing, and I will be loving every minute of it. That is what you need to do to take your mind off the pain. And use Voltaren! It is a lifesaver when the muscles get so tight they cause extra pain by pressing on the nerves.

What activities or treatments have helped you find temporary or long term relief?

Again, Voltaren. I will scream that gel from the rooftops if I could just to get pain sufferers to try it. Activities, well, outside of a hobby you like that will not kill you with the pain is great, and I read, incessantly. Non-stop. Takes my mind way far away from my own issues.

Anything else you would like to add?

Living with constant nine on a 1-10 scale pain is hard enough. The government interfering with the pain medicine regimen I have been on for over 20 years (some from the 10 before the surgeries, some from the 11 since the surgeries) just makes things worse. The fear is overwhelming that my doctors will start being forced to follow the ridiculous reductions of opioids that the DEA is pushing on the pharmas that distribute them. They should just be working on the street drugs that are causing all this insanity.

I am terrified of the amount of suicides that will follow any serious reduction in availability and restrictions on distributing prescriptions. People in serious chronic pain will see no alternative but to end the pain in the only way available to them: suicide. I am just trying to stay strong and hope my doctors (who are wonderful, by the way) will never completely bow down to the horrid restrictions that the government is attempting to impose on the doctors. Because, without my meds, I do not know what I would do. I know getting out of bed would be more than I could handle. Sidebar: I cannot sleep in a bed anymore, which means I no longer sleep with my husband. I have to sleep on a recliner, and even that is beginning to cause serious issues. I only sleep an hour or two tops at a time, which means I am sleep deprived all the time. That is not the best frame of mind to be in should my doctors change their policy.

Please consider making a donation to RSDSA today!

Written by Marisol Pérez for the RSDSA blog.

Please consider making a donation to RSDSA today!

Written by Shannon Beckman for the RSDSA blog.

In 2009, I was at a concert to see my favorite band. I was downstairs and I heard the music start so I ran up the stairs in my flip flops. I stumbled and ended up falling backwards, landing on the step behind me, and hyperextending my big toe. While I was in a lot of pain in the days that followed, I heard from everyone that, “There is nothing you can do for a broken toe” and hoped it would heal on its own. It began to get worse and eventually I ended up in a walking boot, with instructions to ice it frequently for six weeks.

As weeks went by, the pain got increasingly worse and the symptoms got stranger. My entire foot rotated between a bright red, angry color and a pale, purple shade. I began to experience shooting pains up my leg and every inch of my foot began to feel the intense pain that RSD/CRPS patients know so well. After three months of boots, foot apparatuses and pleading with the doctor that, “This pain is not normal,” I was sent to a foot specialist. Instantly when he felt the ice cold temperature of my foot and saw the purple coloring, he diagnosed me with RSD.

I will never erase from my mind my first day of physical therapy. They started with desensitization and I remember crying in pain as the PT ran a Kleenex over my foot. Slowly, we worked our way up to a towel, sandpaper, massage, and beyond. Over the course of the next year it was a constant attempt to figure out something that would stop or slow the RSD’s progression. I did at least 12 nerve blocks, physical therapy, and was on a heavy load of medications. I had been an athlete all my life. I loved running more than anything and thrived on pushing myself to physical limits. Now, I could barely walk and could not even sleep under a sheet because of the sensitivity. I dreaded car rides, because the vibrations of the car brought me such intense pain. The pain eventually began to work its way up into my lower leg and into my other limb.

As my fellow RSD/CRPS sufferers know, this type of pain can not be fully explained. There is the reason why it is positioned at the top of all Pain Indexes. The most accurate description I have ever heard of RSD/CRPS is that, “Someone has set your veins on fire.” There is no relief and no real end in sight. It is physically and mentally exhausting. I was in my last year of graduate school and trying my best to juggle life as a newly diagnosed RSD patient while attempting to live a seemingly normal life on the outside.

In the summer of 2011, My husband and I got a huge surprise. We were going to be parents. Due to some issues in my medical history, doctors had always told me that my odds of having a child without fertility help were slim. As happily surprised as I was, my initial response to the pregnancy was fear. I had been on a prescribed cocktail of Lyrica, Savella, a clonidine patch, and several other medications. I had also recently had a nerve block and a DEXA scan, all of which are contraindicated in pregnancy. My fears for the baby were also coupled with fears for myself. If I was in this much pain with medication, how in the world could I function without them? What would the extra weight do? It was a complex series of emotions running through our family.

My fears slowly eased, however, as my pain drastically improved throughout the pregnancy. Even though pain was still there, it was almost like getting to go back to the time before the awful disease had struck. I knew that the increased hormones were probably helping my cause and that more than likely the pain would return after pregnancy, but I was thankful for a few months of relief.

Our perfectly healthy daughter, Ally, was born on March 14th, 2012. And call it luck, hormones, or my own personal miracle, RSD pain returned, but in a much milder form. I know that all parents share unique bonds with their children, but I will forever be so thankful for the little one that brought me out of the dark shadows of this difficult disorder. Had the horrible pain from RSD continued, my life would still be overflowing with joy due to our amazing little girl. But something about carrying her allowed my foot to be healed, and for that I will always be grateful.

For the past eight years, I have continued to deal with RSD, although in a milder form than many of our RSD/CRPS Warriors. I do have pain everyday and I have to be very careful to take care of my foot. Something as simple as a blister, a stepped on Lego, or a falling can of tomatoes can send it into a flare that takes weeks or months to recover from. Cold weather is especially rough and keeping my feet warm during the winter season is vital.

Although my RSD still presents me with challenges, it is not lost on me how lucky I am that my condition is where it is. There are thousands who suffer in pain daily and my heart breaks for each and every person that struggles and is diagnosed. To the newly diagnosed patient, my advice would be “Do not lose hope!” I am an example of a young person that actually improved over time, even when it all seemed hopeless. A quote that helped me through my most difficult days was from actor Michael J. Fox. When asked about his challenges with Parkinson’s disease, he responded, “I’ve accepted that this is my situation, but I’m not resigned that it has to be this way always.” Try and wake up everyday with the belief that today could be better than the day before.

To those RSD/CRPS Warriors actively struggling with this disease, thank you for sharing your stories. This community has helped so many people, regardless of the stage they are in, learn and grow in pursuit of better mental and physical health. The stories raise awareness; the awareness will one day hopefully bring us a cure.

To the caregivers and loved ones, Thank You. Watching someone you love in pain is excruciating. When a patient is diagnosed with RSD, everyone around them is affected. My husband, Keith, has been so good to me throughout this journey. I could not have tackled this road on my own.

To all my fellow RSD survivors (and you ARE a survivor if you have made it this far), please remember you are SEEN, you are LOVED, and you are NEVER alone. 🧡

Please consider making a donation to RSDSA today!

Written by Scott Setchel for the RSDSA blog.

What happens when the strong get tired?

What happens when we don’t want to fight anymore?

Is this what I am reduced to?

Once I was full of life

Once I was full of joy

Once I was full of laughter

I endured cancer, not once, but twice

I could dance

I could skate

I entertained hundreds and hundreds

Of people over the decades

But, now I am tired

I am fighting a disease that has no cure

I am fighting a disease that no one understands

Unless you, yourself, have it as well

The constant pain is 24/7

It is wearing me down

It robbed me of who I was

It has robbed me of any meaningful future

I can’t do what others do anymore

I can’t go hiking

I can’t go camping

I can’t go skating

I can’t stay active

To do so unleashes an intolerable amount of pain

It’s a task just to get out of bed sometimes

It’s hard to make plans with family and friends

Because the pain can change day to day

Because the pain can change hour by hour

Trying to meet new friends is hard

As they don’t understand this monster we live with

Trying to date is harder

Who wants to attach themselves to such a broken person

The sting of hearing we are just not compatible

You can’t hike or camp or dance or bowl

And honestly, who can blame them

They want a companion to do those activities with

They want someone who

Won’t back out on a date at the last minute time and time again.

Won’t be exhausted just getting out of the car

Won’t lose their balance just walking into a restaurant

Won’t feel like they have to walk on eggshells around you when they touch you.

Will be able to enjoy physical activities

Will be able to make plans at the last minute

Will be able to enjoy the embrace of a loved one without fear of causing pain

They just want a normal relationship.

Well this is my new normal

And it is full of physical pain

And it is full of emotional pain

And it is full of isolation

And it is full of disappointment

And it is dark

And more and more

I am understanding exactly why

It is called the Suicide Disease

So what happens when the strong gets tired?

Please consider making a donation to RSDSA today!

Written by Christopher Skinner for the RSDSA blog.

Your struggles don’t have to be lonely or a family struggle! There are good people out there to help!

I am a Christian man with full body Complex Regional Pain Syndrome (CRPS). I have been full body for about a year now. I was playing basketball with two students at a drug and alcohol rehabilitation school working as a student advisor/teacher and was forcefully pushed from behind causing me to fall into a heavy stage bench. This caused me to tear my rotator cuff, hit my head, and hurt my neck. Either this event or the surgery about five months later caused me to develop CRPS in my entire right arm. I also believe to have CRPS in my neck although beyond an MRI, I have never had this looked into any further to this point in time. I have experienced significant spread over the past six years. As far as diagnosis goes, my orthopedic surgeon was hinting at the fact for a while, however, I was not officially diagnosed until my birthday by a workers’ compensation independent medical evaluation doctor about a year and a little under two months later. I did not fully understand the diagnosis for about three years after that and now there are still a lot of things that “defies any logic!” I have been fighting for some assistive devices since 2015 and others since June 2018. Bills and everything else got way ahead of us. Sometimes you have to reach out for assistance, even if you have a lot of pride due to a previous situation. This is the purpose of this article.

Never be ashamed to ask for help if you need it.

The first time we got help was from the RSDSA Jenkins Patient Assistance Fund. I thank God each and every day for the help they provided with our heating during a long winter and perhaps the greatest gift was a person reaching out to me. I was stuck in the phase of, “Maybe this is as good as it gets” for a really long time. Most of the ideas were shot down by the fastest gun in the east, but one stuck leading me to another method of help. This person knows who she is and I am forever in her debt as I am firmly the “Engineer behind my own healthcare.” She also taught me that, “Physical illness is not a weakness of yourself, rather a weakness of the body and strength is measured by your heart and your mind.” When someone offers their help and support, do not shut them out due to pride.

When I was a lot younger, I was disabled and I did ask for help so it is the most painful thing for me now. I received help and I was gracious for it, but after a year and a half into my disability of only receiving $499 of cash assistance and having two children, I was judged by people that I loved making it hard for me to ask for any help ever again. I had a cyst removed in 2007 and started working so much that I missed life. I even began to go for my master’s degree in mental health counseling during this point and had all of my coursework complete. I developed so many roles that it made the process of becoming disabled so much more difficult for the second time (I will do a second blog post about the mourning process and CRPS later).  I was injured in 2013 and in June of 2018. I was given a wheelchair accessible van and electric wheelchair. I had been fighting ever since for OT items and PT items including a ramp and a lift chair. The current law in New York state for workers’ compensation may not allow for a wheelchair accessible van in full. Many of my falls were from going up and down our stairs. Even though New York state workers’ compensation law 442.3 was on my side as the bills were submitted, causally related, and not paid or challenged within 45 days for my wheelchair and the van. I could have been all set up by the end of August for these two items. Needless to say I was left with no other option than to ask for help and I am so happy that I did.

I learned about the Grace Ridge Church through a program that they did at the Damascus School and learned at the Area of the Aging that every once in a while they complete projects like wheelchair accessible ramps for those in need. I contacted my fourth grade teacher regarding the project, as I knew she went to the church, who then contacted George Maxson from the Grace Ridge Church. A few days later, I got a phone call from George saying that out of dozens of people I was chosen for the project. Mrs. Alexander and her husband were both teachers of mine and I sent just a five paragraph message explaining what I had and what was going on. George came to our house for what I thought would just be for a wheelchair ramp, but then he started asking what else I needed to be done. Our house was built in 1806, I believe, but it is in great shape for its age. However, there is quite a bit of work that needs to be done to our house to fix it 100%. Back in my prime, I would have been able to do much of the work, but I am not a spring chicken at 38. The greatest gift George gave to us was inviting the family to 3:16 fest in Honesdale, PA and Brit Nicole spoke to my family causing a significant change. The mission group was going to come earlier, so George was able to get several guys together to make the ramp functional until the men’s mission group from the First Presbyterian Church in Endicott, NY was able to come to finish the ramp. The men from the Grace Ridge Church came here on Saturday morning and did not complain once about using their days off to help my family and I. There were hiccups because they forgot to order a lot of the supplies, but I have never seen a more patient bunch of men. We will never forget what they did for us.

Then November came and I was able to educate individuals from the First Presbyterian Church in Endicott, NY about CRPS and other struggles that we face on a daily basis. The added struggles that each of us can face can make our lives harder and even unbearable. The men that took the time to come here prayed with our family on a daily basis, listened to my testimony, prayed over me, and allowed our boys to work right along with them while sharing their lives with them. When they were done, we had working electric in our basement again, trees cut up out of our yard, a beautiful wheelchair ramp, our old windows covered with plastic, a clean yard, newer furniture, and the greatest gift of all a brand new bible with explanatory text on the side. Each one of the men signed the bible with a special message not just for me, but for our entire family. Chris shared a special verse for the boys which is now a part of my new favorite set of verses from the bible. Each man shared a piece of themselves in some way that touched us forever. I am able to deal with a flare better with God’s help and that is through reading the bible, listening to Christian music and sermons, or by reaching out to friends for help.

Here is a photo of some of the men who helped us out. The wheelchair ramp is unfortunately covered up, but the work by their hands is impeccable. Pastor Tim is missing from the photo. Vinnie Canosa who took the photo is from Grace Ridge and the other men from Grace Ridge Church are also missing except for George Maxson was with us the entire time. Thank you to everyone and God bless all of you!

I have received additional help from Vitalitus which makes a supplement of superior quality called Palmitoylethanolamide. This supplement works by helping to calm down your body’s glial cells in CRPS. According to Dr. Chopra, an amazing doctor who specializes in CRPS, glial cell activation has been shown to have a significant impact on CRPS expression. Eddy Cardentey was gracious enough to provide a discount for me as a lower income pain patient. He has been a truly amazing business owner and a proud supporter of RSDSA for quite a few years. This supplement does help a lot and is starting to help improve my pain expression along with my current medication which addresses the NMDA portion of the problem called levorphanol tartrate. I really appreciate all of the help and support from Vitalitus. This company is located in Pittsburgh, Pennsylvania, has a stellar reputation, is regulated by the FDA, they are NSF and GMP approved, fully made in the USA, and given an exquisite A+ rating by the Better Business Bureau.

There are other uses for Palmitoylethanolamide, but I can only speak to the use for CRPS at this point in time. When we are in a better place we would love to try it for our son for his autism spectrum disorder and our other for ADHD. As a patient who is using the product , I would like to thank you for your continued support. God bless you!

The last positive thing that has taken place is that I recently went to the Office of Vocational Rehabilitation which each and every one of us is entitled to if we get social security. You might be sitting there saying, “Why is this useful to me?” You may also be saying to yourself, “Well, I have lost all of my roles in life so what can I do now? Can I do anything?” If you are not pulling yourself out of bed everyday than the answer is probably going to be not a lot, but let’s say if you worked at it and forced yourself out of bed and to do a little bit more every day then what could be your possibility? Could you see yourself starting aqua therapy?

Each one of us needs to have a goal every day. I have full body CRPS so my goals are not much and neither should yours. You should not plan to run a marathon, but let’s say you can stand up for two minutes. Could you do a few dishes? If your arms will not lift them could someone hold them for you to wash? The goal is movement. The goal is not movement to put you down for a few days, and movement will hurt especially if you are not used to it, but work through the pain for just a little while to increase your tolerance. I know you guys can do it.

I have 100% of my coursework complete for a master’s degree in counseling. I have a one week residency to attend which I have to do at a conference center and I cannot even get myself up to use the restroom on my own or drive on my own so I have a lot to work on before I can do this. I do not have to be able to drive, but I do not know if I can take a caregiver to the residency. Aqua therapy is my best bet as it creates a weightless environment. The Office of Vocational Rehabilitation can help me with a lot of devices to navigate life. I am not ready to give up on my dream of being a licensed counselor, which I could do out of a room attached to my home. How many of you are prepared to let a diagnosis tell you what you can or cannot do? By this I mean enjoy life. With the right equipment and assistance we can do anything we want. I just need workers’ compensation to promptly provide me what I need like they are supposed to or financing to come in to the Office of Vocational Rehabilitation.

As individual CRPS Warriors, we are just one person drifting through this process, but I recommend that you reach out to others to help. RSDSA is an amazing source of help and an advocate in the most difficult of times. They are out there fighting for better treatment for CRPS patients each day. My goal next year is to make it to the RSDSA CRPS walk in Long Island, NY as it is their biggest fundraiser and I would love to meet others with CRPS. I have a Facebook Group called Complex Regional Pain Syndrome Warriors and supporters and I would appreciate it if you would join. I am a Christian and will send you any supportive passages that I find or sermons if you ask. I respect all other religions and rarely post on the page about God unless it is God in general. I am looking for other administrators to share stories and invite anyone they can. The goal is to introduce CRPS to the general community, nurses, doctors, etc. Then I offer ways to help with workers’ compensation if asked.

The bottom line is that there is a need within our community for help and we cannot be afraid to ask each other and our community for help if we are in need. If we are not in need and in any position to help others than I highly recommend a donation to the RSDSA.

Please consider making a donation to RSDSA today!

Written by John and Mary Ann Schildt for the RSDSA blog.

It was a day like all days, but one that would change our lives forever. Our daughter was a freshman music therapy major at Shenandoah University in Winchester, Virginia. On February 12, 1990 she called us about extreme pain in her right hand/wrist. There was surgery for what was thought to be carpal tunnel. However, it was not carpal tunnel at all. In April of 1990, we received the dreaded diagnosis of RSD or Reflex Sympathetic Dystrophy. It was the beginning of a pain that does not go away just like a fire that continues to smolder and burn.

Thus began a thirty year journey of suffering for Shannon as well as our family. She suffered the physical pain; however, we experienced the pain of seeing our daughter suffer and not being able to help her, thus the emotional pain for us.

The years have brought endless trips to doctors and hospitals. The trips began with the first surgery in Winchester, followed by trips to Johns Hopkins, Thomas Jefferson Hospital in Philadelphia, the Cleveland Clinic, Georgetown as well as many others. Shannon became a walking pharmacy as various medications were tried. We stopped counting the number of surgeries as well as medications. She has continued to receive nerve blocks in an attempt to still the fire as the RSD rages on and we continue to suffer.

Like the number of surgeries, we stopped counting the financial cost when we hit the million dollar mark.  The pain and cost continue to rage.

In addition to medical bills, there has been the loss of a young woman’s social and work life. Plans would be made for movies, picnics, vacations and one of her big joys, Broadway shows, only to be cancelled due to the extreme pain and fatigue.

Shannon never believed in not working. She gave all she could at work no matter how severe her pain was. She worked in medical billing and transcription for as long as she could. She then began her “Dream Job” of working for an insurance company where she could learn new skills as well as use the lessons she learned being a patient. She thankfully also had the opportunity to work from home. There were many times Shannon could not drive to work due to the intensity of the storm raging in her legs even though work was not far from home (30-50 minutes one way).  At one point, there was a new position that was being created and it would have been perfect for Shannon. She got in touch with the managers and expressed her interest.  The one kicker is she would be going out on medical leave, but she would be returning mid to late January.  Of course, the best laid plans sometimes do not turn out the way we want them.

December 1, 2017 was the last day she worked. There would be no returning to work or posting for her dream job.  We thought she would be off for four to six weeks, but it did not happen. It devastated Shannon and us as well. This was our daughter and we kept asking ourselves, “what can we do to ease her suffering and pain?” Shannon tried to protect us and never wanted us to see how bad it was, but we knew as her parents. We all cried and tried to hide our tears from each other. Many tears have been shed as we watch our daughter deal with this Beast that continues to rage its ugly battle every minute of every day of every month of every year. We have watched her try to do all she did in the past knowing life is vastly different for her and for us. We do not have the physical pain, but the emotional pain is so draining. We have watched our daughter robbed of the life she thought she would have and be robbed of so many other things. However, as painful as it has been, there have been many blessings with the greatest gift being our family growing closer and stronger. The saying “I have your back” truly applies with us as we will always have Shannon’s back and she will always have ours.

While the powerful inferno rages on, we continue to hope and pray that someday soon doctors will find answers to this beast and we can all breathe as the flickering RSD flames are finally extinguished once and for all.

Please consider making a donation to RSDSA today!